MUSCULAR DYSTROPHY ASSOCIATION, INC.

Joined Coalition Comments to U.S. Department of Transportation Re: FAA Reauthorization Act Requirements MDA and AAPD Filed Comments Re: Advanced Notice of Proposed Rulemaking (ANPRM) Re: Accessibility Standards for Universal Changing Stations

Joined a Statement Signed by MDA on Department of Education IAAs and Impact on Students Supported the IDEA Full Funding Act

Advocated for the passage of the Alleviating Barriers to Caregiving Act Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported the reintroduction of the MVP Act Supported the reintroduction of the Patient Access Act Supported the introduction of legislation that would better facilitate wheelchair repair Supported legislation that increases access to home and community-based services Supported the HEARD Act Advocated for the passage of the Newborn Screening Saves Lives Act Filed MDA Comments to U.S. Food and Drug Administration (FDA) on Impacts of Patient-Focused Drug Development Meetings RFI Joined an ITEM Coalition Letter to Request a Meeting with Administrator Oz to Discuss Pending National Coverage Analysis for Standing Systems in Power Wheelchairs - ITEM Coalition Led an ALS Organizations Letter to Speaker Johnson and Leader Jeffries Urging Swift Passage of ACT for ALS Reauthorization Act Joined a Coalition Letter Sent to Congressional Leadership in Support of NIH Sent an MDA Letter to Sens. Bill Cassidy and Bernie Sanders Re: Senate HELP Committee Markup of the ACT for ALS Reauthorization Act Joined Coalition Comments to CMS Re: Proposed Rule on Interoperability Standards and Prior Authorization for Drugs - MAPRx Filed MDA Comments on Defending Constitutional Rights and Exposing Institutional Abuses Task Force Hearing on "Universal Basic Fraud: Vulnerabilities in Medicaid Waiver Programs" Joined Coalition Comments Warning of Massive Coverage Losses under Final Work Reporting Requirement Rule Coalition Comments Re: Making Improvements to the Hart-Scott-Rodino Act (HSR) Premerger Notification and Report Form Filed MDA Comments to Centers for Disease Control and Prevention (CDC) on ICD-10 Code Classification of Ultra-Rare and Genetic Diseases Joined MDA Statement to Energy and Commerce Subcommittee on Health Markup of the ACT for ALS Reauthorization Act Joined Coalition Comments to Congressional Appropriations Leaders on NIH FY 2027 Appropriations Requests Filed MDA Comments to U.S. Food and Drug Administration on Plausible Mechanism Framework to Develop Individualized Therapies Joined Coalition Comments Urging Against Cuts or Policies that Further Impact Medicaid and the Affordable Care Act (ACA) in Budget Reconciliation Joined Coalition Comments Re: FY 2027 Newborn Screening Programs Appropriations Request Joined Coalition Comments on NIH FY 2027 Budget Request from the Administration Joined Coalition Comments on FY 2027 NCATS Alliance Appropriations Sent MDA Comments in Support of ACT for ALS Reauthorization Act of 2026 Joined Coalition Comments to Centers for Medicare and Medicaid Services on Significant Concerns with Medicare Competitive Bidding of Ostomy and Urological Supplies Sent an MDA Statement on ACT for ALS Reauthorization Introduction Sent MDA Comments to Durable Medical Equipment Medicare Administrative Contractors Re: Proposed LCD - Power Mobility Devices Joined Coalition Comments to Durable Medical Equipment Medicare Administrative Contractors Re: Local Coverage Determination (LCD) for Wheelchair Options/Accessories Joined Coalition Comments to Durable Medical Equipment Medicare Administrative Contractors Re: Proposed LCD - Power Mobility Devices Sent MDA Comments Re: Rare Disease Educational Materials from the Center for Drug Evaluation and Researchs Accelerating Rare Disease Cures Program and the Rare Disease Innovation Hub Supported the DREAM Caregiver Health and Wellness Act

Encouraged Congress to maintain its oversight of the implementation of the FAA Reauthorization Act of 2024. Joined Coalition Comments to U.S. Department of Transportation Re: FAA Reauthorization Act Requirements Supported the introduction of Air Carrier Access Amendments Act

Supported robust appropriations for the NIH, CDC, FDA, and other critical agencies for our community Joined a Coalition Letter Sent to Congressional Leadership in Support of NIH Joined Coalition Comments Thanking House and Senate Labor, Health and Human Services, and Education Appropriations Subcommittee Clerks Joined Coalition Comments Re: (FY) 2027 Funding for Department of Housing and Urban Development (HUD) Programs Joined Coalition Comments to Congressional Appropriations Leaders on NIH FY 2027 Appropriations Requests Joined Coalition Comments Re: FY 2027 Newborn Screening Programs Appropriations Request Joined Coalition Comments on NIH FY 2027 Budget Request from the Administration Joined Coalition Comments on FY 2027 NCATS Alliance Appropriations

Expressed opposition to effort that caps indirect costs in NIH grants to 15% Supported efforts to add FSHD to the Peer Reviewed Medical Research Program Filed MDA Comments to U.S. Food and Drug Administration (FDA) on Impacts of Patient-Focused Drug Development Meetings RFI Led an ALS Organizations Letter to Speaker Johnson and Leader Jeffries Urging Swift Passage of ACT for ALS Reauthorization Act Sent an MDA Letter to Sens. Bill Cassidy and Bernie Sanders Re: Senate HELP Committee Markup of the ACT for ALS Reauthorization Act (S.4472) Filed MDA Comments to Centers for Disease Control and Prevention (CDC) on ICD-10 Code Classification of Ultra-Rare and Genetic Diseases Joined MDA Statement to Energy and Commerce Subcommittee on Health Markup of the ACT for ALS Reauthorization Act (H.R.8205) Filed MDA Comments to U.S. Food and Drug Administration on Plausible Mechanism Framework to Develop Individualized Therapies Sent MDA Comments in Support of ACT for ALS Reauthorization Act of 2026 Sent an MDA Statement on ACT for ALS Reauthorization Introduction Sent MDA Comments Re: Rare Disease Educational Materials from the Center for Drug Evaluation and Researchs Accelerating Rare Disease Cures Program and the Rare Disease Innovation Hub

Supported the MVP Act Supported the Patient Access Act Supported the ALS Better Care Act Supported the Access to Genetic Counseling Services Act Supported the Alleviating Barriers to Caregiving Act Joined an ITEM Coalition Letter to Request a Meeting with Administrator Oz to Discuss Pending National Coverage Analysis for Standing Systems in Power Wheelchairs - ITEM Coalition Joined Coalition Comments to CMS Re: Proposed Rule on Interoperability Standards and Prior Authorization for Drugs - MAPRx Filed MDA Comments on Defending Constitutional Rights and Exposing Institutional Abuses Task Force Hearing on "Universal Basic Fraud: Vulnerabilities in Medicaid Waiver Programs" Joined Coalition Comments Warning of Massive Coverage Losses under Final Work Reporting Requirement Rule Joined Coalition Comments in Support of the Medicare Advantage Improvement Act Joined Coalition Comments Urging Against Cuts or Policies that Further Impact Medicaid and the Affordable Care Act (ACA) in Budget Reconciliation Joined Coalition Comments Urging Against Further Cuts or Changes to Medicaid in Budget Reconciliation Legislation Joined Coalition Comments to Centers for Medicare and Medicaid Services on Significant Concerns with Medicare Competitive Bidding of Ostomy and Urological Supplies Joined MDA Comments to Durable Medical Equipment Medicare Administrative Contractors Re: Proposed LCD - Power Mobility Devices Joined Coalition Comments to Durable Medical Equipment Medicare Administrative Contractors Re: Local Coverage Determination (LCD) for Wheelchair Options/Accessories Joined Coalition Comments to Durable Medical Equipment Medicare Administrative Contractors Re: Proposed LCD - Power Mobility Devices

Supported the reintroduction of the Patient Access Act

Joined a CCD Coalition Letter to Civil Rights Division of the U.S. Department of Justice Re: Extension of Compliance Dates for Nondiscrimination on the Basis of Disability; Accessibility of Web Content and Mobile Applications of Recipients of Departmental Financial Assistance - CCD Rights TF Coalition Comments Re: Making Improvements to the Hart-Scott-Rodino Act (HSR) Premerger Notification and Report Form

Joined Coalition Comments Re: (FY) 2027 Funding for Department of Housing and Urban Development (HUD) Programs Joined Coalition Comments Re: Request for HUD to Release Section 811 Project-Based Rental Assistance Notice of Funding Opportunity

Joined Coalition Comments to U.S. Senator Jerry Moran (R-KS) in Support of the Veterans STAND Act

Joined Coalition Comments Re: Farm Bill Proposed Changes to the Supplemental Nutrition Assistance Program (SNAP)